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Key points
- People with schizophrenia experience multiple, often contradictory, forms of ableism simultaneously.
- It jarred and surprised me when others accused me of playing up my schizophrenia for personal gain.
- Even if someone's disability isn't obvious, they could still be fighting a war in their mind.
The email came in at 4:39 p.m. Pacific on a Tuesday with the subject line “Mental Health Crisis - Press Release.” I had already logged off from email for the day. But considering the New York-based A+E producer worked well past 7 p.m. to get me the promotional materials, I figured I could make an exception.
My anxiety stirred as I clicked to the 30-second promo for the special I’d filmed two months earlier. Since I was only 26, nearly every “real” adult in my life—from my mom and her boyfriend to a colleague to my therapist—had felt free to warn me that the television network might try to exploit or sensationalize my story.
“Monday, September 20th…” the announcer’s voice began. “Personal stories from real people across the country.”
And then, my own voice: “It can happen to anybody.”
The camera cut to a shot of my full face of makeup illuminated by lighting that gave the appearance of flawless skin, framed by hair I’d spent quite a bit of time blow-drying and straightening.
I didn’t look like a freak or a serial killer. Instead, I looked…normal. Beautiful, even.
When the full special was released, it included that before my illness I’d gone to UC Berkeley on merit scholarship and graduated Phi Beta Kappa with honors. It also highlighted my postrecovery return to competitive, full-time, professional work.
What the televised interview didn’t show were the thoughts I’d had in the shower a few days after coming to terms with my diagnosis: “OK, you’re going to give this a shot. And if it doesn’t work out, if you don’t make a full recovery, it’s fine. You can always just kill yourself.”
It took me a while to realize that many people see only the well-presenting, televised version of me and can’t really imagine the schizophrenic me who spent 10 months in psychosis. The version who talked to herself on the street. Who smoked other people’s used cigarette butts. Who was once designated a ward of the state during a three-week stint in a psych ward.
As deeply as it wounded me, it didn’t surprise me when I experienced the typical form of ableism from those who witnessed my departure from reality. One night early in my recovery, a drunk relative reminded me I had spent a week on the couch, catatonic with a blanket over my head. “Do you want to be homeless?!” he asked. Then he suggested I be put on a conservatorship.
In the wake of doctors and laypersons telling me that my life as I knew it was over—a casualty of disability—it did surprise me when I experienced the opposite form of ableism.
I’m sure the fact that I’m a white woman who gets her nails done every other week, her brows done every four, and her highlights touched up every six months plays a factor in my ability to pass as able-minded. I’ve even talked my way out of treatment on multiple occasions: In the lead-up to one of my psychiatric hospitalizations, I walked around the crowded urban lake near my apartment talking to myself. But I had my AirPods in, so many people around me didn’t think twice when I passed them, likely assuming I was on the phone.
Often, no one can tell I’m disabled. Maybe this is why people so often accuse me of claiming ableism or even performing my disability for attention.
I began a new job, my first full-time role at a mental health nonprofit organization, right around the time I was set to film my segment for A+E. My favorite part of my job was using my lived experience to train mental health service providers on how to de-escalate people in crisis due to serious mental illness.
I expected my coworkers to support and celebrate my advocacy, especially since it was both in line with the organization’s stated mission and popular. Audience members’ jaws always dropped when they learned the articulate young woman before them had experienced challenges with hygiene, encounters with law enforcement, and multiple sedations by injection in psych wards.
But my more experienced co-facilitator chided me for relying too much on my personal experience in the de-escalation training despite its roundly favorable reception and even requests for more from our clients.
After the organization politely declined my offer to film my first day on the job for the A+E special, a decision I was fine with, she told me, “I’m so glad we didn’t film your first day…for a variety of reasons.” In her eyes, the positive feedback from the de-escalation training and the special had made me full of myself.
It’s unfortunately common for people in mental health recovery spaces to compete over whose mental health is worse. My diagnosis is technically schizoaffective disorder, bipolar type, which I along with most people with this diagnosis typically explain as the combination of schizophrenia and bipolar disorder.
But once, when I explained my illness this way, another patient in my treatment program was quick to say, “You don’t have schizophrenia and bipolar. You have schizoaffective disorder. It’s one diagnosis.” She went on to tell me, “Maybe you should consider sharing less. After all, our sessions are only 45 minutes,” ostensibly because my problems were less pressing and didn’t deserve the same amount of time and attention as others’.
I could shut up about my schizophrenia. I could accept the rewards of recovery and leave it at that. But there are devastatingly few examples of people publicly thriving with schizophrenia. I speak out about both my disability and the ableism I face in the hope of ensuring no one has to go through the pain, self-loathing, and hopelessness I went through.
I didn’t choose to have schizophrenia. But I believe I have it for a reason. And I will spend the rest of my life investing the privilege I have as someone with schizophrenia in recovery—as the A+E girl—advocating for my community.
